In February 2018, my 4 1/2 year old daughter, Veronica, woke up one morning, completely “sick.” She changed overnight from a typical child into one whose entire “sense of being” was engulfed with anxiety and fear, food restriction, dysgraphia, brain fog, aggression, sleep disturbances and more. Our home life was turned upside down and we were frightened about this change in her.
I was fortunate, that in a few days I was able to take her to a local New York Adolescent Psychiatrist, Dr Mark Reitman, who mentioned this might be PANDAS. I told him she had strep three months earlier. He looked at her tonsils and advised me to see my pediatrician. I was given antibiotics as we waited for blood tests to come back to see if the blood markers, ASO and D-nase were raised. Over several days on antibiotics she improved to some degree. But there was a mix up in the blood and the pediatrician took her off the antibiotics. She began to regress off the antibiotics. Dr. Reitman had to review the blood and re-instate antibiotics and she improved again—but not entirely. I was so relieved that the worst of the episode seemed to be over.
I Googled PANDAS and looked at the NIMH and Pandas Physicians Network websites that both advised parents to contact PANDAS Network. I read about the Cunningham Panel and talked to volunteers. I wondered why, although less severe, my daughter still had dysgraphia, her hands shook, she had brain fog, she had a poor memory, her elementary school said she needed special assistance.
Her Cunningham Panel showed very high numbers and seemed to explain in part why brain fog, mood issues and hand trembling was continuing. I found Dr. Susan Schulman, a great pediatrician who has worked on PANDAS cases for decades. We decided based on our family history of strep and frequent rate of infection to do a tonsil and adenoid surgery. Veronica quickly improved. Then, we used IVIG because her cognitive abilities were not improving-- memory, focus, alphabet recall, and communication was poor and more issues. After IVIG, my daughter had an uptick in mood issues and it was hard on her and our family. But over a three months it all calmed down.
To manage through the healing time, I called PANDAS Network volunteers frequently and attended the Autoimmune Enceph, Post-Strep Conference in Arlington, VA. There were 200 new parents there with me and it helped me feel not so alone with this scary illness. I want to advocate for better awareness, more acceptance of this illness. I was lucky I got help fast. I know others are not so fortunate.
Now my 6 year old Veronica is back to baseline and doing great!!!! I am grateful and hope this story helps other to NEVER GIVE UP! Kerry L.
